Choosing my poison...

[Sharon]

Hi all, I'm determined to finally begin taking meds for this condition.
After suffering for over 2 years with all this, I've finally had it.
Unfortunately, the reason I hadn't begun meds till now still exists:
The possible side effects listed for all the meds that affect the immune system really freak me out!
I've already tried Plaquenil and had a terrible allergic/neuropathy reaction
and Rituximab isn't approved for SJS in my country,
so I'm down to choosing my poison from:

Prednisone- the most harmful long-term option
Cellcept & Imuran- increasing chances for skin cancer and Lymphoma (I'm already at risk for both...)
Methorexate- Killing my chances of ever giving birth (from what the rheumy informed me)

(Correct me if I'm wrong on this please)

So, can anyone suggest a better alternative or help me make a choice? 
 

[irish]

The first thing you need to do is talk with your doc about the methotrexate and getting pregnant. I am 73 years old and have taken the drug twice but I was over child bearing age so never paid any attention to that detail.

The next thing to do is to talk your self to the edge of your fear. I didn't say out of the fear but to the edge. There are none of us who take these drugs who are fearless. In fact some of us are falling down scared to death about it. The good thing is that a goodly amount of the side effects are the nausea, headache, aches, fluey symptoms, etc. Stopping the drug usually helps decrease the bad effects in short order. There are times in life when we must take a risk and just do it. If you never try them you will never know if you could have had a better life.

I have been on IVIG for 10 years and 4 different products, one of which I had allergic reaction to and another one that might have caused issues---we aren't sure but doc changed to another product. I have taken Methotrexate twice and it didn't make me sick, in fact I felt better, but I got infections. I have an immune disorder so we knew going in that I might not be able to take it due to infections. Again, I took the chance. Then I tried the Cellcept and was on that about 8 months. I quit that abruptly cause I thought it was causing issues, but chances are it was the stress of losing my hubby that precipitated all me physical problems at that time. Doc was not happy with me. I told him I was willing to give it a try again but to keep the dose a little lower.

I just finished 5 months of steroid pulse therapy which is 1000 mgm of solumedrol IV over 2 hours. This is to see if we can stop the hearing loss in my good ear. I am totally deaf in the right ear and losing hearing in the good ear. Blood works shows 2 antibodies that kill off hearing. So far haven't lost anymore hearing. Now, I was scared spiteless about doing this one. I get really wired taking high dose steroids and I was scared to death. I have taken prednisone for 10 years and in changing dosages so I have had that to deal with. That is the med that works the best.

I have myasthenia gravis and neurologist wants me on 10 mgm prednisone every other day to help in case I have a myasthenia crisis.

I also gave the Imuran 2 trys and got sick from that proving that my body can't tolerate it. Some people just can't take it.

Now in spite of all this on again off again, I feel that it has been worth it. We have sick bodies that change so much and it doesn't make sense to try a med now and then to see if there is a chance of improvement. My immunologist told me recently that I was resistant to taking these meds. He said this nicely as he is a nice man. I told him it was not that I was totally resistant but that I always have to weigh the side effects possibility against what is going on in my life. I took care of my hubby for so many years and the fear of getting too ill to care for him from taking a drug was always in the back of my mind.

Now, I have filled your head with some info and maybe you can do some searches on line that will help you make a decision. The worry about the cancers has never loomed too large for me because we are high risk anyway by having autoimmune. In fact, the whole world is high risk from the all the chemicals we have used the past years. We do what we have to. Good luck. Irish

[Sharon]

Thanks for sharing your extensive experience Irish, you seem to have tried nearly
everything, and then some!
So far every med I have tried (Plaquenil, Salagen, Low Dose Naltrexone) has given me a terrible
reaction. It took me over 2 months to get the Plaquenil out of my system after it caused me awful neuropathy full-body pain after just a week on 100mg. So yes, I'm reluctant to try the "Big Guns"
with my sensitivity to meds. But I know you're right about giving them a try.
BTW- my doctor was very clear about Methorexate negatively affecting fertility and refused to prescribe it to me

[Lindabridge]

Sharon,

I was on methotrexate for three years in order to reduce symptoms from Relapsing Polychondritis, which is a connective tissue disease in the AI family. Since I was in my late 40's, childbearing was not an issue. However, I didn't like the side effects. I managed to go into remission after a found a probiotic to take along with the methotrexate . Fifteen years went by without any health issues.

With the onset of  Sjogren's in January of this year, I thought that methotrexate might help me, and I asked my rheumy to prescribe  it again. He advised against it, saying it would do nothing to help Sjogren's, since it's a different kind of AI disease. I took it for three months, but there was no reduction of symptoms. I had to agree with him.

Is methotrexate working for other people with Sjogren's? 

[gurs]

Most of us dont like having to take medications, but we are sick, we have an illness, and from experience, without treatment, things will get worse. I stopped plaquenil years ago and within 3 months, all my neuro issues came out big time.

The only thing I have been able to tolerate is the steriods, which have caused me huge problems with my bones, hair, eyes, and
my fat face, thin skin..the list goes on.

But, without them, I dont think I would ever be able to get out of bed at all. To me, its a quality of life issue, and I try to live each
day like it was the last. I dont know what will happen down the road, I just care about how I feel today.

Im trying to get off the steriods still, but not many options for us.

Good luck

Gursie

[jazzlover]

Very interesting, Linda. I took metho for what my doctors THOUGHT was RA .. it was really Lyme, so all I got was bad stomach pain and a lowered immune system.

I would refuse steroids unless I was dying (personal choice.)

Which symptoms are your worst. Sharon?

[Sharon]

Linda- All I know is that my rheumy raised Methorexate as a treatment for SJS then decided it was not for me.

Gurs- I've heard of many of the side effects of steroids, but how exactly did steroids affect your hair and eyes?
I understand that Cellcept also weakens the immune system but has less side effects than steroids. Have you ever tried it?

Jazz- I have so many symptoms I don't know where to even begin choosing the worst, but what drives me crazy personally is the strange inflammation I get on my eyelids (which causes them to swell, droop, look deformed and uneven) and inflammatory tears (causing my eye to become bright red and face to burn if I cry) and my skin looking like it's breaking down (don't know how else to describe it) and extreme sun and heat sensitivity. Of course, having constant GI I can barely eat anything anymore.

[warmwaters]

I've known the feeling of terror at starting these new medicines. Before Sjogren's took over, I was definitely a person who avoided anything stronger than an ibuprofen or an antibiotic.

prednisone definitely helped me - I was on 10 mg for 2 years. I had less pain, less neuropathy, but I got very puffy, with weight gain. I had the beginnings of the "widow's hump".  But the worse problem for me was that I became vulernable to infections, and healed very poorly.  At the time, I didn't know I also have an immune deficiency.  BTW, once you are on it for a while, you have to come off very slowly. My doctor had me come off by reducing it 1 mg per month.  I still occasionally use prednisone for a "short burst" trying to break a bad flare. I use it for 5 days, and then stop. (Don't do this with out doctor guidance - this a plan I worked out with my doctor.)

I also tried Cellcept. I felt better on that than any other treatment I'd had. I had energy, I didn't hurt much, I could sleep. Three weeks in, I got a very rare fungal infection, and had to stop.  The sort of thing where the doctor said "I've only seen this in text books". When you are  looking at the Cellcept side effects, make sure you are checking dosages. I think it's often used in much higher dosages for other treatments, and the symptoms reflect that. Double check though, it's been a while since I looked at it.

So I have to avoid the medicines that suppress my immune system, because I already have immunodeficiency.

No easy answers here. But you can try these, and be prepared with a support network to respond if there's a problem. For example, I never start a new med on the weekend. That way, if something goes wrong when I start it, I can get in touch with the doctor. I talk with the doctor about what issues I should be looking for, and when to call, or just stop.  When I first started taking these meds, I didn't do these crazy things, but now I've learned they help.

[Sharon]

Thanks Warmwaters,
What dosage of Prednisone do you take when you do the burst?
How would I know ahead of time if I also had an immunodeficiency issue?
I couldn't find information on the dosage of Cellcept that may cause the more troublesome side effects.

[Jasper]

According to the new guidelines, Methotrexate is recommended for Sjogren's.

http://www.sjogrens.org/files/research/RheumatologyCPG.pdf

I am on Plaquenil and have been for 3 years. I was also using Prednisone tapers (20 day tapers) for flares. However, due to the frequency of the flares, my Rheumatologist wanted to try some other treatment and get away from using Prednisone so often. I agreed with her. I did not want to keep taking Prednisone so often. My mother took Prednisone for years and ended up with horrible side effects from it (severe osteoporosis, multiple very painful vertebral fractures, perforated gastric ulcer, wheelchair bound).  Her spine collapsed from osteoporosis and she was in horrible pain from it for years. So, I am very leery of ever going on steroids for the long term.

I was never tried on Methotrexate because I cannot take it, along with several other drugs, due to having had Hepatitis C in the past. So the first drug my Rheumatologist tried was Imuran.

I tried Imuran, starting at 50 mg a day), but it made me sick (nausea, vomiting, severe diarrhea, bloating, as well as just not feeling well). It also caused my liver enzymes to skyrocket. Plus, it did not help me at all. It was stopped after one month.

Next I tried Cellcept, starting at 500 mg twice a day. I was at that dose for a month. Then I increased to 1000mg twice a day. I got sicker and sicker ..... severe and overwhelming fatigue, nausea, vomiting, bloating, explosive diarrhea, and more. I felt like I was in the worst flare ever. I could not function. The one thing that improved on Cellcept was the joint pain. It basically disappeared. However, I got Shingles at 1 month and an abscess at a little over 2 months. I stopped it after 2.5 months because I was so sick on it. I felt improved (back to my normal Sjogren's self) after stopping it. The joint pain came back too.

However, I still had severe Sjogren's fatigue (my greatest problem), cognitive issues, joint pain, etc. So, a month after stopping Cellcept, I went on Rituximab infusions and have enjoyed vast improvement in all of my symptoms with the Rituximab infusions. I have had two sets of Rituximab infusions (2 infusions, 2 weeks apart, every 24 weeks). My first set of infusions was given in Feb./Mar. 2016 and my second set was given in August 2016. I can function pretty well and have noticed global improvement in my symptoms (fatigue, neuropathy, saliva, cognitive function, general well being, pain, and more). I don't feel as good as I did pre-Sjogren's, but I certainly feel vast improvement and I have a life again. I can function and enjoy life.

I do know Cellcept works well for some people so my bad experience with it is not the same as the positive experience that some others have. Some people have few or no side effects. Others, like me,  have side effects.

I think it is just a matter of trying out the various drugs and seeing what works for you.

As far as side effects go, they can increase in severity as the dose is increased. When you read the literature, keep in mind that most of the worse side effects occur in transplant patients and they are receiving higher doses than we would receive.

Also, when you go on the drugs, the Rheumatologist will need to monitor lab work frequently so that any sensitivities and lab changes can be picked up early and the drug stopped if the lab gets out of whack. 

[Sharon]

Thanks Jasper, did any of the AI meds help with your MCAD symptoms as well?

[Jasper]

Which MCAD symptoms? I don't have MCAD or maybe I don't know what the letters stand for.

[Sharon]

Oops, got confused 

[warmwaters]

Hi - I did some digging on the cellcept. I was taking 500 mg a day.   When you look at the dosages for transplants, depending on the type it's about 1-1.5 grams 2 times a day. So I was taking 500 mg, and some people take up to 3000 milligrams.  I don't know how much of a difference that is in possible side effects. I also don't know about what your doctor would want you to take. We're all so different.

For my prednisone burst, I take 10 mg for 2 day, 5 for 1 or 2, and then 2mg then 1 mg. I'm super drug sensitive, and these are relatively low doses.  I know people with asthma who do a couple of days 60 mg under certain circumstances. And please, let me repeat - this seems the right approach for me after a variety of experiments supervised by my doctor.

Best
Warmwaters (my other painkiller is a hot bath!)

Thanks Warmwaters,
What dosage of Prednisone do you take when you do the burst?
How would I know ahead of time if I also had an immunodeficiency issue?
I couldn't find information on the dosage of Cellcept that may cause the more troublesome side effects.

[trejonina]

Hello, my research points to Plaquenil causing blindness or damaging eyes,and methrotexate might cause cancer.